The remarkable Seth Cook

Rob Stafford Correspondent • Profile

DARRINGTON, WA. -

Once you learn about Seth Cook's battles, you might think every day of his life would be a brutal uphill climb.

But Seth would say he's having too much fun to complain. He considers himself the luckiest kid in the world, with great parents and the coolest dog around.

No matter what the obstacle, Seth seems to find a way to pick himself up and keep coming back for more.

Above all, this is a boy in a hurry. There's no time to waste. For Seth, life is too precious: a non-stop joyride that could end anytime.

Kyle Cook, Seth's father: All three of us know it's inevitable, it's gonna happen. We just have to be as ready as we can be for it.

Patti Cook, Seth's mother: I do believe that God chose us to raise Seth. I don't think this was an accident.

Seth's mom and dad, Patti and Kyle, were off-and-on high school sweethearts from the tiny logging town of Darrington, Washington.

Patti: It took me moving away to realize that he couldn't live without me. (laughter)

When she returned to Darrington, they started dating again.  Then in 1992, they got married and not long after, Patti got pregnant. It was something she discovered on her 21st birthday.

Rob Stafford: Happy birthday.

Patti: Oh, yeah. It was the best birthday present I'd ever gotten.

Kyle, an avid outdoorsman, was desperate for a son and on July 22, 1993 he got his wish. Seth Anthony Cook arrived with blond hair and blue eyes.

Patti: He looked like a really healthy baby boy.  He had good coloring.  He just was a cutie.

Stafford: So you two have everything you want?

Patti: Yeah.

Seth was the picture-perfect baby-- or so his parents thought.

Stafford: What was the first sign that something might be wrong?

Patti & Kyle: By three months, we were starting to get concerned.

Seth's skin started to tighten. He was losing his hair, and he couldn't gain weight, despite a hearty appetite.

Kyle: We had grandmas and grandpas trying to help put weight on him, too.  It wasn't working.  Nothing was working.

Doctors in Darrington and elsewhere were baffled. Then, before Seth's second birthday, they got an answer.  But not the one his parents wanted.

Patti was home alone when the diagnosis arrived in the mail.

Stafford: What did the letter say?

Patti: The letter said that it's progeria.

Stafford: Progeria.

Which meant Seth would never grow up. He would just grow old at an astonishing rate.

Victims of progeria essentially have the bodies of 70 and 80-year-olds. In many ways they resemble their own grandparents more than kids their own age.

They face the same serious health risks as their grandparents: Catastrophic heart attacks and strokes that can happen anytime. It’s an extraordinarily rare disease. There are only about 40 diagnosed cases of progeria in the world today.

Back in 1995, when Patti read the letter disclosing Seth's diagnosis, it laid out a bleak future:

"Heart disease, thinning of the skin, loss of hair and loss of bone strength occur in childhood or early teenage years- currently we have no way to halt these changes."

Stafford: And you're sitting there at home...

Patti: By myself with this letter.

Stafford: What is that moment like?

Patti: I was in shock. It had to be the loneliest moment I think I'd ever had. You know I thought this wasn't gonna end well.

Stafford: Do you feel like just going into a corner and crying?

Patti: Well, I think I did a couple of times.

For support, Patti and Kyle sought out the Sunshine Foundation, an organization that grants wishes to sick children. In 1995, Seth and his mom and dad attended Sunshine's Annual Reunion for Progeria kids and their parents, the real experts on this disease.

Kyle: We got more information from other parents than any doctor could ever tell us.

Stafford: How did you feel these children looked?

Kyle: They looked aged.

Patti: Weak. It was hard to look at the older kids and see what tomorrow had in store for us.

But Seth has made it easier for them, just because of the kind of kid he is.

Patti: He was no different than anyone else in his own eyes-- in his own mind. He was really eager to learn things and he wanted to go.  He was ready to go a hundred miles an hour everywhere.  He learned to walk before he could crawl.

Stafford: So right away, Seth is a boy in a hurry?

Patti: Yes. Ready to go.

Stafford: Do you think there's a reason for that?

Patti: Oh, yeah. I don't think he ever, at any point, was ready to see life pass him by.

MORE FROM DATELINE

Dateline Section Front

Point blank: Sgt. Cole's story   Video: Soldier shooting raises disturbing questions Photos: To Iraq and back Justice halted: The murdered prosecutor Hard lessons: Teacher-student love turns lethal Bullies caught on tape: Aggressors, or victims? Inside the terror plot that 'rivaled 9/11' Clark Rockefeller: Famous name, infamous life How the phony French 'Rockefeller' conned Americans The crossbow incident Dateline Section Front   Add Dateline headlines to your news reader: